Conversations About HPV
by Alexandra Molotkow
So how did you find out that you had HPV?
A little over two years ago, I had an abnormal pap smear. I had an HPV test and it was negative, so they said, We’ll try it next year and see what happens. The next year I had an abnormal pap smear. They did what’s called a colposcopy, which means they take some cells from your cervix and look at them and see what’s going on. They were very careful never to use words like “precancerous.” It was always sort of like, “there are cells that look iffy.” And from my understanding, cervical cancer progresses very slowly, so it can be many years between having cells that look iffy and cancer cells.
They did the colposcopy, and they basically said they wanted to scrape out some stuff. So I went for something called LEEP, which stands for Loop Electrosurgical Excision Procedure, where they use an electrified metal loop to scrape out your cervix.
That sounds painful.
It was horrible. When I went for that procedure they did another HPV test because I asked them to, and it was positive. When they do an HPV test, they only test for the major kinds, the ones that can potentially cause cancer. There are others that cause genital warts. But I did test positive for a number of the potentially cancer-causing ones.
How did you feel once you found out?
It was very difficult to explain to a sex partner. When I disclosed it, there was immediately this confusion, a lot of misunderstanding, when I would say things like, In all likelihood you’ve probably been exposed to it before — “Well, how do you know? Maybe I wasn’t.” Which was statistically probably not true, but I felt like it was how I would react, so I totally understood. I think there’s this idea that only women have to care about HPV, because men don’t get tested for it. So guys will say, “I know I don’t have it, because I’ve been tested for everything.” Well, actually, you haven’t.
I was definitely more focused on the trauma of the procedure, because there’s kind of nothing I can do about having HPV. I should test negative in a year or two, and hopefully that’s the end of it. But it’s definitely confusing. I’ve never had any other STIs, so I didn’t have anything to compare it to, but it wasn’t like — here’s what you have, here’s the treatment, here’s the solution. It was an afterthought. You might have precancerous cells, and you also have HPV.
And to have confirmation of something that many of your friends have probably had as well —
Right. I talked to friends about it, and they’d all either had some experience with it, or knew someone who had had HPV, or a colposcopy, or the LEEP procedure. But I think making myself vulnerable, by saying I’d had this really horrible experience, was the only thing that would have made them talk about it. There are girls I’ve been friends with for years and years that have never volunteered this information. So I think there’s a lot of stigma.
It’s amazing, I feel like I talk to my friends in such excruciating and graphic detail about so many things — like, Isn’t it gross when you go to get a manicure and they clip your cuticles and there’s someone else’s cuticles in the clipper? And I feel like people talk openly about their sex lives, and all the sex they’re having with all these people, but not the flip side. And that’s kind of dangerous. It’s like the way you share something on social media, you’re sharing the filtered version. Look at this dinner party! You’re not going to share the part where you got too drunk and had a big fight with your boyfriend afterward.
Did it make you feel better to realize how common it was?
Yes, sort of. But there are lots of terrible things that are common and still suck when they happen to you. I think it probably lessened the shame around it. I told my mom, in the context of, I had this medical procedure today and it was much worse than I thought it would be, and I’m feeling really bad about it, and — I just wanted to talk to my mom. And she didn’t really know what HPV was. I had to give my mom sex ed, which was not that awful. But I don’t remember learning about HPV the way I remember learning very clearly about other STIs.
Can you tell me about the procedure?
So the colposcopy was really not that bad. It’s basically a pap smear but a little more. You get the speculum, and they scrape out a sample. I didn’t know until the colposcopy was over that I couldn’t have sex for a week afterwards. I did not know until I was about to get the LEEP that I couldn’t have sex for a month afterwards. I feel like that would have been helpful to know. But the LEEP — it was pretty terrible. I haven’t had a lot of surgeries, but it felt pretty invasive; it’s possible to do it in a hospital, and get a general anesthetic, but I did it as an outpatient procedure in my doctor’s office, and they give you a local anesthetic.
Like an injection —
Like a needle, in your cervix.
Yeah, so that was unpleasant. It has to do with electric waves, so they give you what’s called a grounding pad, which is like a giant sticker on your thigh that keeps you from getting sick, I guess. The whole thing took about half an hour. I was really shaky. Like, I couldn’t stop shaking, I started crying kind of uncontrollably, and also it was not a good week to schedule it. I think if I’d had more information about what it might feel like, I would have been more conscious about self-care in the days leading up to it. But basically it’s like a metal loop, and they’re scraping off these tissue samples from your cervix. And I felt it even though there was anesthetic, so they had to keep giving me more anesthetic with the needle, and I think more than even feeling pain, I was just kind of freaking out, and it was kind of like, “Don’t move, if you move I’m going to miss — “
They said that?
Yeah. I’m usually a really good patient, when I get blood drawn or anything, I’m usually fine, so it’s unusual for me to get so emotional during a procedure. I think I was unprepared for that.
It’s an unusual kind of procedure.
Yeah. I have a tendency, I think a lot of people probably have a tendency to be a bit — I don’t want to say cavalier, but since I’ve been going to a gynecologist I’ve been making jokes about going to the gynecologist. You sort of want to forget that what’s happening is actually kind of an invasive, emotional thing. And there’s kind of nothing worse than a bad gynecologist. I love my gyno now, but the reason I didn’t get an HPV vaccine actually was because at the time I had a gynecologist who I really didn’t like, and who I felt was being really pushy with me about getting it. This was before anti-vax was a huge thing, but I’d read some articles about concerns around the HPV vaccine. I think if my doctor had been a little less pushy, and a little more open to hearing about what I’d read, and sharing her medical opinion, I think I would have been more open to getting it.
That sounds like a really awful experience. I’m sorry you had to go through that.
Yeah, I’m fine now. And I definitely, the hour before I went, started Googling horrible stories, which — don’t do that.
Why did you do that!!
I know. “I haven’t enjoyed sex since! I’m pretty sure I’m infertile! I’ve never been normal ever again!” None of those things happened to me, but it definitely wasn’t like getting a wart removed, or getting a shot, or getting your teeth cleaned. It definitely felt like a significant thing.
Do you think it was more the physical pain, or the shock of it?
I think it was both. Even just getting a pap smear is not the most pleasant feeling in the world, and that plus a needle, plus an electrified metal loop, plus half an hour, is a taxing thing physically. But I think I also felt a little sad to have found myself in that situation. I mean, I thought that I’d been careful. So, it turns out you can get HPV with condoms, supposedly, which I didn’t know. I had been sleeping with more people in a shorter period of time than I had been at other points in my life, so I couldn’t help but feel like I’d done something I was facing consequences for, although obviously you can get lots of STIs from sleeping with one person one time.
So it felt punitive somehow.
I think it did. Taking the morning-after pill feels punitive. Not for everybody — I think some people can do what they need to do, and have no emotional repercussions, and I don’t want to discount that experience at all. For me, it felt like — it was like I was disappointed in myself for letting something happen to my body that I didn’t mean to happen, I guess.
I think a lot of it is when something makes me feel ashamed, or sad, in a way that feels cliched, or like I should have known better, then I feel guilt about the feeling, and that makes it worse. Sometimes you sleep with someone and you feel shitty about it. Not everything has always made me feel empowered that I thought would. And I think it’s been important for me to acknowledge that, and to not have too much bravado about it. Just because I haven’t always found monogamy to be the most fulfilling solution, doesn’t mean that everything else I’ve tried has worked always, either.
It’s almost impossible to think of it objectively.
Right. When I was explaining it to my mom, I was saying, it’s not dissimilar from when your dermatologist sees a mole they don’t like and decides to remove it, in terms of the risk and what you’re trying to guard against. But I think sexual health comes with a lot of emotional baggage for many people. If you get chlamydia, you take antibiotics, and you’re fine. And I haven’t had that experience, but I would assume, for some people, that feels a lot different than when you get strep throat and you take antibiotics and you’re fine. You feel like you have to guard it like a secret, and you can’t talk to people about it, and you feel guilty about having allowed this to happen, as if you can control it, which you really can’t. Especially for something as common as HPV, it’s like, how could I not be exposed to it eventually? And it still felt like this really isolating and shameful experience.
How are you feeling about it now?
I feel like I did what I needed to do. My doctor seems to feel like everything’s fine, and most people, after they have the LEEP, the iffy cells don’t come back. So I’m not expecting there to be any lasting health repercussions. The nurse at my gynecologist’s office said something I thought was really funny on the phone. She said, “You know, the vagina and the cervix are a dark and moist place, and things just love to grow there! Things just flourish!” And I’m like, Oh — that’s a nice way to think about it, I guess. It’s a mystery! Who knows what’s happening in our bodies at any given time? I think it’s really important to respect and acknowledge that, to know that you can’t control it, and that’s OK. It’s not like if I hadn’t slept with X number of people, this wouldn’t have happened.
Like you said, HPV is this really common infection, that usually doesn’t, but sometimes does have serious effects. It’s hard to conceptualize.
Right. And I think HPV is kind of unique, because it’s linked to the social stigma of STIs, but it’s also linked to the cancer fear. I think the cancer fear is similarly prevalent in this country because it’s so common and so little understood. We have some sense of the risk factors, but they’re either risk factors that we can’t control, like environmental or genetic ones, or risk factors that we’re sort of not willing to change too much, like diet, and smoking.
What really fascinated me was that I remember specifically thinking, Oh, thank god it’s the cancer kind and not the genital warts kind. Like, the idea of having cervical cancer was less scary than the idea of having to have genital warts.
Why, do you think?
I think it was sort of like, as long as it’s internal — as long as it’s not visible, and I don’t have to tell everyone — it feels less embarrassing. It’s horrible, this idea that I’d rather die without the shame. I think it’s a very archetypal and ancient idea, like dying rather than not being a virgin, and it’s very much tied up in these anxieties about purity and what it means to be damaged, and death before dishonor. This idea that having cancer is less bad than having genital warts, which is treatable and not the end of the world.
It’s hard to discuss this stuff, because there’s pressure to be game for anything, while at the same time there’s still so much shame and stigma around what can happen when you do have sex.
I feel like, as a feminist, I don’t want to regret anything I did before I got HPV. I could have gotten HPV when I was whatever age, the first time I had sex. But I do feel like I wanted to maintain this narrative that the sex I was having was a really positive thing.
All kinds of horrible things happen. And it doesn’t mean we shouldn’t claim our sexuality, or that we should regret our decisions, but it does mean we have to have more conversations about how to feel safe, and how to feel OK, and how to take care of ourselves once something does happen.
So, can you talk about having HPV?
Yup. I got it from my boyfriend, and it manifested as warts around my butt, in and around my butthole, which was hilarious in retrospect, but not fun at the time. And I had to go for about a year and get it burned off, get like — what’s it called, like in a can, and it comes out and burns?
Yeah. That was not fun. I remember feeling miserable for it, and then I’d have to wait for the spots to heal, and then eventually they checked me out and said that I had to get an operation because the warts were going inside the canal, and like, it could potentially grow cancer cells or whatever. So I had to get crazy surgery. That was terrible. Yeah.
Did your boyfriend have warts at the time?
No — we didn’t have anal, and he didn’t have any warts, so I don’t know how it works, but I got it pretty much while I was with him. You can never really say who gave it to you, because, as I understand, you can have it for a while and then it shows up one day. But yeah, I don’t blame anyone. I feel like that was just a year of my having to deal with that.
Was it better or worse than having a different STI?
I mean the experience, it sort of drags on and on, these warts would come back in clusters. Every time I’d get them burned off, they’d come back, for about a year. And that was fucking annoying. And I noticed the skin doctor I was seeing was so flat, like so not engaging — he was just there, burning warts off my ass. It was just very structured, and it was very weird.
The doctor who performed the surgery on me was completely socially inept, and I remember when I went to get checked out one of the times, it was all these other people in there with ass problems, and the walls were so thin I could hear what other people were saying about their ass problems, their hemorrhoids or whatever. And he had a nurse and an intern come check me out and, like, use me as a fucking guinea pig, so I had three people crowding around trying to shove things up my ass, and he’s teaching them what to do. I just remember it not being fun, and, in retrospect, hilarious.
I’m so sorry for laughing.
Yeah. It was a bunch of people around my ass. Like, crowding around my asshole, working on it. After I had the surgery, one wart came back. And the surgeon dealt with it rather than the dermatologist I went to, and rather than spraying it with the can stuff he actually stuck a Q-tip directly on the wart, and I think that was the most painful thing I ever experienced, I nearly fainted. He didn’t understand why I was reacting so strongly, but it was just so fucking painful. With the spray, I kind of got into it — it’s like laser hair removal, there’s kind of a charge where you’re like, Woo!
I don’t tell anyone. Because I’ve since been vaccinated, and the warts are gone. That was a while ago. And it’s the thing where everyone has it. So yeah.
So you have HPV.
I actually don’t have it anymore!
Thank you. I just got my test results back a few weeks ago. It’s been a long journey. It was kind of a confusing thing to get, because there are so many strains, and it’s so mysterious. I had a strain that caused me to have a genital wart, and I got that removed, and then I guess from sex ed in high school, I always thought there was no cure for HPV. You get it, and then you have it, and then sucks to be you. But when I went to get tested, they were like, “You know 90 percent of people’s immune systems purge HPV, right?” No. Nobody ever told me that.
How did you first notice the wart?
I took a shower, and when soap got on it, it really stung. I was like, what’s this thing? And it sort of looked like a pimple. And where there’s a pimple, I’m going to pop it. That didn’t work. Sensitive area. And I sort of just hoped it would go away for a good couple of weeks. It was really itchy. Finally I went to my doctor about it.
Do you remember that visit very clearly?
Oh yeah. So, first I saw my primary, and she looked at it, and she was like, “Oh, I think it might be a molluscum,” which I had never heard of. I had to schedule a later visit with the gyno to look at it, and she said, “Doesn’t look like a molluscum to me. It looks like a wart. So here’s how we figure it out: we put some vinegar on it, and if it turns white, it’s a wart.” And so she did, and it was.
She said, “Alright, so here are the options for removing this thing: scalpel, freeze it off,” or some form of chemical treatment. And I said, Scalpel sounds good, and she said, “Ok, you wanna do it now?” And I said, You’re damn right I do. I asked her what she thought I should do in terms of informing past partners — do I have to call everybody, do I have to call everybody within a certain timeframe? And she’s like, “Honestly, it’s so common, I wouldn’t even bother.” Given that license, I chose to follow those instructions.
Out of everybody I know and talk with really frankly about sex, I am the most insistent about condom use, and I don’t really sleep with a lot of people. So I was like, This is so unfair!
Did you have a sense of how you might have gotten it?
I had a suspicion that it was the guy who I had most recently slept with, but I mentioned that HPV is pretty mysterious. One of my roommates at the time was a nursing student, and she was like, “Hey, you know, I did this project on HPV and I studied it pretty extensively, and here’s the thing: there’s not a consistent incubation period. So once you get it, all it means is that somewhere in your entire sexual history, you had sex with somebody who had HPV. And it’s so common that if you’ve had sex with two people, you’re very likely to have been exposed, and so many people are asymptomatic, and there are no tests for guys, so it’s really hard to nail down.”
It was frustrating to not be able to know, because I like knowing things and feeling like I understand what the effects are. I like for things to be very clear, and when they’re not clear, I get upset. But it meant there wasn’t this witch hunt for somebody to blame. I was pretty levelheaded. If somebody gives me a cold, it’s not their fault. Colds aren’t only gotten and given by bad people, and STIs are kind of the same.
OK — so the doctor scalpelled off the wart. After that, were you done?
Yeah. That was the only symptom that I ever had. But mentally I was unclear about what my status was. It was maybe a couple of years after that I learned your immune system can purge it. It was so upsetting to me — I felt like I had so little control, I guess because I had a history of being so careful — that I was celibate for two years afterward. I was like, I don’t know how to deal with this, I don’t know how to talk about it. I think I was calling it sexual quarantine. It was a really big deal to me.
Celibate because you didn’t want to expose people?
Yes. And because I didn’t know — I mean, I knew what the practical steps for protection were going to be, but like, I felt so uncomfortable about the idea of having to talk to a partner about it, prior to any sexual activity, and the implications, I guess.
What do you mean by implications?
Well, I had sort of leveled these harsh judgments on this person who I don’t know, but suspect exposed me, and I thought that somebody else could just as easily place those on me. I was placing them on myself.
How did you “break edge”?
[LAUGHS] It was a couple of years ago. I guess I had a pap come back normal, and enough time had passed, it was becoming more and more apparent that everything was fine. I met a guy who I hit it off with, and a friend who I hooked up with a few months after that, and I just became more relaxed about things, sort of slowly.
Did it change the way you thought about STIs in general?
Possibly. Because you know, some things are facts of life, but some things are facts of life that you have to deal with, and some things are facts of life that somebody else has to deal with. Prior to that it had been something I hadn’t had to deal with. So I guess I became more able to talk about it, because I had to.
Do you think if you got an STI in the future, you would react differently to it?
I would still be totally pissed, because it’s a pain in the ass. You have to go to the doctor, you have to do fucking paper work and shit. I hate that! It’s not cool. And like I said, I take preventative steps, and so it’s frustrating to think about those not working.
I actually thought I had another wart within the last few months, that I went and had looked at immediately. It turned out it was an ingrown hair. But it was this emotional roller coaster — I was seeing somebody kind of new, who I really liked a lot, and I had to tell him what was going on, and that was uncomfortable. But it’s the sort of thing where, once you can have a conversation about it, it’s like exposure therapy. You just become more comfortable.
You raised a good point about, if somebody gives you a cold, it’s not their fault. And it’s interesting especially applied to something like HPV, which is so common.
Yeah. It is, but then also, there’s just the visceral reaction of like, Warts on your junk?! There’s a rational side of it, which is somebody gave you a cold, big whoop. But when intimacy comes into play, it’s so much more complicated. Just because of the levels of trust, and because, in my case, there are many more people who I’m in a room with than in a bed with. If somebody gave you a cold or a stomach flu, you wouldn’t have to have an emotionally charged conversation about it. I mean, maybe some people would? I wouldn’t. [LAUGHS]
You said you just got a pap back that was normal?
Yeah, and I got a straight-up HPV test. It’s right here on the spreadsheet in front of me: negative for HPV. I high-fived my roommates when I got it in the mail.
Do you still think about it a lot?
I still date and sleep with people less than average. I kind of always have, just because I’m kind of cautious and shy, and not so interested in casual arrangements necessarily. I’m more interested in something where I’m really excited about the person. But after this, it was like, well, now I really only feel comfortable sleeping with or dating people who I feel comfortable talking about this thing with. It became a greater criterion. Which, really, I think of as a gift — it’s raised my standards. I’ll say to partners a lot of the things that I said to you: the metaphor of the cold, and explaining a lot of the data on how common it really is, and how science just kind of hasn’t gotten a handle on it yet. It’s sort of like a sorting hat, you know? Depending on how somebody reacts to that discussion, a decision will be made.
You know, I think about TLC, in what, 1992? And this is still so fraught. Give me Left Eye, bring her back to life, put a condom over her eye and get people to be loudmouths about this shit! I’m really studious about it. I told you, I like to have facts, I like to feel like I understand. I got some knowledge on it, and a new approach to intimate relationships, a little bit. And now I don’t have it anymore, so what I do have are these experiences and this knowledge.
*Please note these interviews are personal stories and should not be taken as medical advice! If you would like to talk anonymously about an STI, email firstname.lastname@example.org